Wednesday, May 15, 2013

My daughter is rejected and I am sort of relieved

With summer vacation approaching, my daughter C. has been officially rejected from a camp specifically designated for severely disabled children.

She is "not appropriate" for it, we were told.

The one-week program is almost entirely subsidized and heavily staffed by volunteers. One of them, a mother of five healthy children, told my son, an architect, about the program. They work together at the municipality and she gave him the phone number of the camp after he had described to her his sister's condition.I only called the camp after my son, concerned that I haven't haven't had a vacation since C.'s birth, urged me (actually "badger" is more like it) to do it.In a way, I am relieved by the rejection. I was wary about leaving her in the care of strangers for so long.But, gosh, a break would have been welcome.

Here is a question to ponder: If your child's disabilities had been discovered during pregnancy, would you have aborted?

With genetic testing being developed for an increasing number of conditions, this option is a real one for more parents than ever before. Many who have aborted after receiving positive test results, cite their government's and their society's attitudes towards disabilities as a major factor. So our efforts to change the status quo may actually save lives.

I know there are parents who hasten to reply to the abortion question with "I can't imagine my life without my disabled child!" But I am not one of them. Had I known not only that C. would have disabilities but the actual extent of them, I believe I would have aborted. More about this quandary in this Guardian (UK) newspaper article.

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About my blog

C. is the youngest of our children. She suffers from severe epilepsy, blindness, microcephaly and profound cognitive and physical impairment.

We have faced hurdles and gained insights through our encounters with the medical, educational and governmental establishments.

Nobody was there to help or guide us.

I would love to spare parents in the same predicament some of the painful mistakes and wasted efforts we have made.

I am also eager to promote greater acceptance, inclusion and appreciation of our children. The new, heightened awareness of people with disabilities tends to gloss over our children - the ones with profound disabilities. They are a forgotten minority within this minority. Still marginalized and even shunned by many "enlightened" societies, they are a long way off from achieving equal rights.